March 2009 Blog Posts (55)

Dustins story

Dustin turned 5 yrs old on and we getting him ready to start kindergarden in sept. His birthday is April 24th. Two weeks later Dustin started complaing his head hurt. He would get a sharp pain and when it passed (only took a few seconds) he would go back to playing. As the days went on the sharp pains got worse. On the fourth day we took him to the ER the doctor there told us he has a migrain and told me to give him Motron and Tylonal and sent us home. The pain is so bad now its wakeing Dustin… Continue

Added by Dustins mom Patty on March 31, 2009 at 6:30pm — 1 Comment

From a While Back

So I was journaling today...something I should do a lot more, and I came across some poems I wrote from this past fall/winter..which was a little rough. I thought the first one was interesting in that it relates alot with my first blog post...I just never remember writing it down! I thought I would share some with you.

(unknown date)

My gut wrenching.



Yet somehow I still got my feet on the ground.

Somehow I still got a smile on my… Continue

Added by Anni on March 31, 2009 at 2:25pm — 3 Comments

Efforts to organize and shave to conquer childhood cancer in Rochester New York

I am organizing the Rochester New York St Baldricks Event on Sunday May 3, 2009 at the ROOST located at 4853 West Henrietta Road (Rochester New York) starting at 1:30pm. I am hoping that the event will have between 75-100 shavees and that we are able to raise at least $40,000.00 this year. Personally I am shaving my head as well and have a personal goal for $5,000.00 raised for the cause and realize that I am not a MISS VIRGINIA or anything like that but as an oncology nurse this cause is… Continue

Added by Lynne Stiefler on March 31, 2009 at 8:49am — 2 Comments

Update on the goings on around here

Well, as you can see by my picture, Ian shaved his hair for St Baldricks Day. This year marked the 3rd time he has done this. He LOVES it and it has become his unofficial kick off to summer.

Most recently, Ian had his very first Tae Kwon Do belt test. He passed with flying colors and is now a yellow belt!

Ian and I are headed to Reach The Day in June. We went, for the first time, last year and had a blast. Ian's goal for this year is to visit Ford's Theater. He is quite… Continue

Added by Carrie Black on March 30, 2009 at 7:35pm — No Comments

What "House" Taught Me...

So I watched House last night and one of the docs was talking about her dead husband who had thyroid cancer and it metastasized to his brain and he died.

Wonder why I got so upset? Big tears, heart racing, shaking hands….Everybody dies when they get a brain tumor. Dies, dead…not here anymore. Turn off the TV, run to the bathroom and sob...I have got to get it under control...

We are on a dead end road and unless some brilliant doctor finds a cure for this damn disease, I… Continue

Added by Laurie Haas on March 30, 2009 at 7:02pm — 1 Comment

Meds/feeding tubes/schedules...a reflection about how a mom manages things...

I have decided to go back in my writings and evaluate our journey so far. I remembered that I had typed up my daughter's medication schedule to post on the refrigerator because it was so complicated. This all was happening in our family in February of last year - 2008. Katherine, who has GBM and was on the chemo protocol of temador and CCNU became very, very ill and we finally found out that she had a tumor that was growing on her liver.

Her blood counts were all out of wack from the… Continue

Added by Laurie Haas on March 30, 2009 at 6:53pm — No Comments

Looking back at how I felt on Thanksgiving 2008

A Year to be Thankful For

I just peeked into my daughter Katherine’s bedroom and saw her snuggled up sleeping this morning. I am so thankful to see her lying peacefully there.

You know, with the holiday approaching, I’ve spent some time thinking about what I give thanks for. It might be easy to say I have nothing to be thankful for…my beautiful 12 year old… my only child has brain cancer…what is there to be thankful for?

Well, I don’t choose to look at it that… Continue

Added by Laurie Haas on March 30, 2009 at 6:42pm — No Comments

I believe in God but...

when people tell me how great it will be when we are reunited again with Maggie,I don't find any comfort in that.Let's just say I live to be 80.That means I have to wait 35 years before I see my baby again.That is an unbearable thought to me. I don't want to sit around and count the days.I'd like to participate in life again for my other children's sake and my husband's.It has been 7 months since our sweet Maggie went to Heaven and it's not getting any easier,in fact it's getting harder.I miss… Continue

Added by Helen Achuff on March 30, 2009 at 10:59am — 2 Comments

just keep your head above, swim.

a good song.

Added by Stephanie on March 30, 2009 at 2:30am — No Comments

What I wrote the day my world changed forever

October 26, 2007

So today my life changed… I don’t know what to do right now except to write. I used to tell clients that I saw to write so I guess that’s what I will do. I don’t remember what the doctors said except that it was a tumor. Then everything blurred and went sort of fuzzy. So the nurses asked me who to call and I started naming people. I had them call mom and dad. I called John and Katherine’s Dad. I called my sister and my best friends TJ and Denise and Jeff. I guess I… Continue

Added by Laurie Haas on March 30, 2009 at 12:12am — No Comments

Childhood cancer News

Added by Deb Dennewitz on March 29, 2009 at 7:00pm — 1 Comment

My Family's Lemonade Stand for ALSF

Wow! What a great day we had. Thanks to crazy Texas weather, after a balmy Spring Break with beautiful, warm days, we had a cold front blow through and woke up this morning with temperatures in the 30's and wind gusts up to 40 mph. In the spirit of Alex's Lemonade Stand Foundation - When life gives you lemons, make lemonade - we stayed positive and were thankful that the sun was out, and there wasn't a cloud in the sky! The temperature eventually got into the 70's but the wind stayed… Continue

Added by Lisa Molina on March 28, 2009 at 11:00pm — 1 Comment

What I Want

I want Hank to walk in the house from baseball practice at St Pats on this sunny, 72 degree day and play catch with me in the back yard. Then I want Anna and Joe to join us. I want Susan to be making dinner and looking out the back windows smiling like she always did when we played. I want to watch Hank go after every ball and pop up as if it was the 7th game of the World Series and his play would be the final out in the Cubs quest for the Championship. I want to watch Hank, and Anna and Joe… Continue

Added by Matt Schueler on March 28, 2009 at 4:53pm — 2 Comments

some people just don't get it.

I feel awkward talking about struggles of life with others. I'm an empathetic person and I feel that everyone fights their own battles. So if people complain in front of me I can sense a point at which they think my "problem" belittles theirs. But that's not how I feel at all. I don't want people to think that way. I got over it, so why can't they? 5 points for teenage un-normalcy. I guess I'll get used to it.

Added by Anni on March 28, 2009 at 4:32pm — 2 Comments

Anna's Hope

I read the story about this incredible young woman in our local paper yesterday.
Her bravery is beyond compare just as my son's was during his treatments.
She is an inspiration and a voice for children with neuroblastoma.

Cin Tesnow

Added by Cin tesnow on March 28, 2009 at 8:39am — No Comments

Letter and Prayer from Daddy


Well, today marks a year since you went to heaven. I don't think a "year" is an appropriate word to explain the timespan from then until now. I am sure it has aged me 10 years if it has even one day. We call this day of your death your "angelversary" but, it is also a birthday for all of us. On this day one year ago, we were reborn into a life of grief that few must live. Reborn to relive the time we had with you over and over again...because there are no new memories that… Continue

Added by rob whan on March 28, 2009 at 12:00am — 2 Comments

Back to the Future: The Incredible Egg


Written by guest blogger and Alex's Lemonade Stand Foundation Grant Award Recipient, Charles Keller, MD.

In 2008 we had an idea: we should try to identify drug treatments that help prevent the spread of tumor cells throughout the body, or at a minimum treat the cancer if it does spread. How could we go about doing this?

Tumor cells moving from one place in the body to another is a multi-step process. First, the tumor cell unattaches… Continue

Added by Alex's Lemonade Stand Foundation on March 27, 2009 at 2:18pm — 2 Comments

St Baldricks Ventura

If the video says it is no longer available click on the HQ next to the sound button. Sorry.

Added by Lorraine Romero on March 27, 2009 at 12:22am — No Comments

Because She Lived, Wilson Lives

This Saturday marks 1yr since Wilson's Grandma Sandi went to be with our family in heaven.

Because of my mom's instance, I took Wilson to get a 2nd opinion on a diagnosis his dr's nurse practioner said was constipation and an umbilical hernia. It turned out to be stage3 Neuroblastoma Cancer.

Even while I broke down and because a mass of hysteria, mom stood firm and never once showed how scared she was for Wilson. She knew that someone had to be brave.

She was… Continue

Added by Clara on March 26, 2009 at 9:38pm — No Comments

PAC2 Table and Petition at Dell Chidren's Hospital Childhood Cancer Fair Last Weekend!

The fair at Dell this past Saturday, the 21st was a big success, and we were so happy to find out on Tuesday last week that we got permission to have a table for PAC2 at the event! We were able to gt about 170 signatures on the petition and it was great seeing Thomas talk to and educate people there about childhood cancer funding issues. And you should have seen their faces when he mentioned the fact that he is now battling leukemia for the 2nd time! I also spoke to several parents and nurses… Continue

Added by Lisa Molina on March 25, 2009 at 2:49pm — No Comments

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